Chronic Pain and Illness in the Modern Age:

States of Privilege and Bodies of Abusei

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Introduction

Modern Times and Chronic Suffering

Chronic pain and illness as a medical category describes ongoing experiences of suffering

with periods of remission and relapse. Chronic conditions such as Lyme disease, Lupus, or

Chronic Fatigue Syndrome will have periods of acute suffering and incapacity that come and go,

and yet do not ever go away entirely. Factors that compromise immunity and energy such as

stress and discrimination, contracting another illness or infection, exposure to an environment

permeated with toxins, or overexertion increase a person’s vulnerability, and frequently—though

unpredictably—trigger flare-ups.

Chronic conditions frequently have highly complex or unknown causes, they are not

necessarily terminal, and they do not have a cure. Impossibly difficult to contain by discourses of

logic and rationality, cause and effect, they may as well be grounds for total epistemological and

ontological rupture and reorientation of the ways in which we have been taught to make sense

of—and conform to—the social, cultural, and material worlds that we inhabit. Yet, chronic pain

and illness is indissociable from the geopolitical, social, and environmental factors peculiar to

our historical period. For instance, following the development of vaccines and antibiotics in the

nineteenth century, as well as improved sanitation and biomedical advances, epidemics of

communicable and often deadly illnesses associated in part with crowded or unhygienic

conditions in urban industrialization, such as cholera and tuberculosis, receded into the

background. These have come to be replaced by chronic pain and illness as life expectancies rise,

and as previously deadly conditions have come to be medically managed but not necessarily

cured (Manderson and Smith-Morris 2010, Rosner and Markowitz 2006, Wendell 2001).
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Experiences of chronic pain and illness take bodies out of time, reach diverse

populations, and thwart ableist paradigms of hyper-productivity. As such, chronic pain and

illness presents bodies and societies with a paradigmatically modern experience that is at the

same time completely incommensurate to the normative time and space of the modern laboring

and consuming subject. Chronic pain and illness make it difficult to work in and move through

the spaces and temporalities that are presumed “normal,” even if one appears able-bodied. For

instance, working an eight-hour workday way be impossible with limited energy.ii Walking a

very short distance or taking a short flight of stairs may pose a barrier or significant challenge to

chronically ill but apparently able-bodied persons on certain days. Standing in a long line waiting

for social services may also be inaccessible. Having to take frequent breaks to move differently,

or rest, or seek medical care disrupt expectations of productivity and mobility in a typical work

or public space environment.

Chronic pain and illness tend to elude the “crisis” temporality and melodramatic rhetoric

of emergency and epidemiology that attended the previous century’s infectious epidemics of

tuberculosis and cholera, or the early stages of the AIDS crisis. Nonconforming to narratives of

recovery and rehabilitation, chronic pain and illness presents a deep structural cultural critique

that is easier to dismiss than to heed. In a cultural orientation where speed, convenience, and

dramatic impact are highly valued, our conceptual impulses and rhetorical tools fall short in the

face of what Lauren Berlant has called “crisis ordinariness” and what Angela Carter, Alyson

Patsavas, and myself have called “states of continuous crisis.” The lack of conceptual vocabulary

exacerbates suffering, isolation, and neglect that chronically suffering persons experience.iii

In addition to such cultural illegibility, the elusive visibility of chronic pain and illness

makes those experiencing chronic illness vulnerable to compounding bias and discrimination
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based on identity such as race and gender. Frequent deligitimation based on race and gender

precludes women and people of color from gaining access to care and support (Mollow 2014).

Ableism and racism work to neutralize and depoliticize the suffering that disabled people of

color experience. Stereotypes of the hysteric, the shirker, laziness, irresponsibility, and so on

place blame on the sufferer for their suffering (Geary 2014, Erevelles 2011, Mollow 2014). This

social aspect of the experience of chronic illness stratifies incidences and severity of chronic pain

and illness along lines of race, class, gender, and sexuality. Occupational and politically and

economically created and sustained chronic pain and illnesses compounded with medical bias

and delegitimation thus tend to impact underprivileged classes and communities much more than

others. Diagnosis, treatment and legitimation for chronic pain and illness are labor intensive and

often costly, making treatment inaccessible to those with less resources. Further, austerity cuts to

social services and resources in late liberal/late neoliberal policies impact both disabled and

racially marginalized communities, which rely on various forms of state and federal welfare

programs (Aho 2017, McRuer 2018, Mollow 2014).

As literary scholar and queer theorist Elizabeth Freeman has noted, what occurs in the

violence of the biopolitical cultural imaginary is a “recalibration of a historically specific aspect

of global capitalism into a narrative of individual or demographic degeneration in the face of

modernity” (Freeman 2016: 337). That is to say, endemic experiences of suffering become

moralized, privatized, and dismissed, and those who are already subject to racism and sexism

become moralized and pathologized as “the inevitable waste product of modernity” (Ibid). The

field of disability studies and the struggle for disability rights has sought to articulate new

vocabularies and conceptual paradigms that might allow us to better accommodate bodily

difference and impairment. More focused attention to chronic pain and illness as well as to the
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experiences of multiply marginalized non-white disabled people have led to more intersectional

disability critique that attends to bodyminds, networks of violence and networks of care,

attention to geopolitics, and to the proliferating capacities of incapacity.iv

A Condition of Privilege and Abuse

Chronic pain and illness are thus paradigmatic to “modernity” also because of the effects

of global capitalist industry, which has generated widespread incidences of illnesses related to

toxicity, which are compounded by an entrenchment of economic inequality that creates access

barriers to health care. Along the lines of social status and privilege, geographies of

environmental racism emerge nationally and transnationally. As a result, underprivileged

communities suffer greater exposures to toxic living conditions. Chronic respiratory illnesses

such as asthma are among the most common examples. As manufacturing is increasingly

outsourced to the global south, the transnational rift of what I will be referring to as “states of

privilege and bodies of abuse” comes into greater relief. In what follows, I will refer to “states of

privilege and bodies of abuse” to describe the relationship between modernity, capitalism, and

marginalized sufferers of chronic pain and illness. A whole additional class of “chronics,” or

“bodies of abuse,” has been created by industrial and post-industrial modernity: those impacted

by unsafe and unregulated working conditions, and those impacted by proximity to toxins

released into the environment from manufacturing plants.v

In the developed world, suffering from chronic pain and illness can be associated with

both positive and negative impacts of “states of privilege.” For instance, those from populations

with access, education, and economic means might come to chronic pain and illness as a

diagnosis or as a condition as an effect of privilege. The privileged experiences of a critical mass

of a population having access to research, medication, vaccines, and timely medical intervention
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has helped to transform deadly illnesses to medically manageable chronic illnesses. These might

range from addiction, depression to cancer and HIV/AIDS.vi On the negative side of “states of

privilege,” privileged nation-states accumulate capital at the expense of the “bodies of abuse”—

disabled and sickened bodies that they simultaneously produce. That is, developed nations and

states that profit off of industry and modes of production, which release toxins into the

environment, result in chronic pain and illness in populations subject to unsafe or harmful

working conditions, or whose homes and neighborhoods are exposed to toxins.

Chronic pain and illness in the modern age thus compose a visceral, lived transnational

archive—or, political geography—of the events and impacts of modernization and capitalist

accumulation on bodies, stratified along lines of privilege and abuse; race, class, gender, and

sexuality. The category and experience of chronic pain and illness fundamentally challenges—

yet is also emblematic of—paradigms through which we understand the long twentieth century,

or the “modern age.” War, gender inequality, medical and environmental racism, and the

transnational impact of neoliberal economic policies often dictate which groups or classes of

bodies experience greater debilitation and suffering. Prognoses of resulting conditions of chronic

pain and illness vary greatly along dividing lines of racial, gendered, and economic privilege. An

identity politics that attends to chronic pain and illness asks us to trouble “the conventional

divisions of illness, disability, and health; and reflect on how global economic relations shape

responses to illness, ailment, and disability” (Manderson and Smith-Morris 2010: 18). I will be

focusing this chapter’s discussion on these hard truths of chronic pain and illness.

This chapter will show the paradigm-shifting power of chronic pain and illness in the

context of and in relation to the long twentieth century in the U.S. and transnationally. I will

introduce and follow a thread of development in disability studies and disability activism that
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begins with the social model of disability and moves into a discussion of more intersectional

approaches to disability in recent scholarship and justice work. The paradigmatic shifts that

nuanced attention to both embodied and relational experiences of negativity, suffering, and

impairment has led to in disability studies has also charted a path by which the field is attending

to intersectional identities. The second half of my discussion will attend to visceral aesthetics in

literature, film, and sculpture. I will read works that articulate and arise out of embodied and

relational experiences of the intersecting oppressions that lead to and compound chronic pain,

debilitation, and illness, particularly in underprivileged populations.

Reshaping Disability Studies Discourse:

From the Social Model to Intersectional Epistemologies of Impairment

Problematizing the Social Model of Disability

Chronic pain and illness challenges representation and troubles categories, and has played

an immeasurably important role in shifting and complicating conversations and orientations in

the field of disability studies. Since at least the 1990s, feminist and antiracist disability scholars

have been pushing disability activism and disability studies to devote serious attention to

suffering, pain, and the negative experiences associated with impairment, and to allow such

acknowledgment to create a more inclusive and complex definition of disability identity, and

thus also of “disability pride.”vii

The field of disability studies and the disability rights movement have taken spectacular,

visible disabilities, impairments, deformities and disfigurements as their initial organizing nodes.

A distinguishing feature of early disability justice organizing was the conceptualization of the

social model of disability as a counternarrative to the medical model of disability. The medical
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model has primarily been cast as oppressive and violent, and focuses on treatments, prostheses,

and procedures that might bring the body in question toward a greater approximation of

normalcy, not just functionally but visually. The rehabilitative horizon of such curative

approaches has been critiqued as intended for the comfort of those encountering the person in

question at the expense of the body’s actual lived experiences of well-being (for example, a

prosthetic leg as opposed to crutches or a wheelchair) (Crow 1996: 10). The medical model casts

disability as something broken, in need of fixing. As a response, the social model of disability re-

locates disability as cultural and infrastructural rather than embodied or medicalized (Mitchell

and Snyder 2005). Accessible buildings, doorways, ramps, buses, curb cuts, etc. are vital

accomplishments by the disability rights movement, aimed at structural elements of the social

model of disability, increasing accessibility and inclusion for certain types of disabled bodies.

The social model of disability made important gains for mobility and access, but a

wholesale dismissal of medical aspects and considerations of disability is disingenuous and

detrimental to the movement. The social model as the only model of disability “reduce[s]

attention to those disabled people whose bodies are highly medicalized because of their

suffering, their deteriorating health, or the threat of death,” wrote Canadian disability scholar

Susan Wendell in 2001 (Wendell 2001: 18). The disability pride movement has favored

affirmative identity politics, refuting rhetorics of brokenness and almost entirely avoiding the

topic of pain, let alone viably entertaining any disabled person’s desire to be less disabled or the

relief that medical approaches might desirably offer (Wendell 2001, Crow 1996). “How can we

expect anyone to take seriously a ‘radical’ movement which replicates some of the worst

exclusionary aspects of the society it purports to change?” wrote British artist, activist, and

scholar Liz Crow in protest of this disavowal of impairment in 1996 (Crow 1996: 5). Indeed,
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medical treatment can frequently make a great deal of positive difference in the disabled person’s

quality of life. Merri Lisa Johnson and others have written about the importance of

acknowledging the liberatory and world-making potential of receiving a diagnosis by which one

can better understand one’s experiences, and feel less isolated (Johnson 2010).

Disability scholar Anna Mollow wrote, pointedly, in 2014, “from disabled people who

suffer from our impairments but are discounted as ‘hysterical,’ more medicalization of our

conditions, not less, is sometimes desired” (Mollow 2014: 196). Mollow’s writings make clear

that the problem of sexist and racist deligitimation and lack of credibility dwells within the

ableism of the social model as “all” of disability. Repurposing the term “hysteria” into her

neologism “criphystemologies,” Mollow proposes an epistemology that centers the compounded

experience of suffering and invalidation to which those with chronic pain and illness are often

subjected. Informed by experiences of chronic pain and illness, disability scholars including

Crow, Wendell, Mollow, and others have drawn attention to the field’s replication of ableist

expectations of political activism (Crow 1996, Wendell 2001, Mollow 2014). If and when we

attend and listen to the experience of pain and chronic illness “as the quandary it really is” within

the disability justice and pride movements, the need for different epistemologies and rhetorical

orientations—and the need to shed the insidious vestiges of ableism (and thereby also sexism and

racism) within the movement—becomes apparent (Crow 1996: 3). While historically important,

empowering, and liberating, the social model as “all” of disability falls short, replicating ableism,

sexism, and racism within the movement.

Not Private: Complex Embodiment and Painful Networks

Acknowledgment of the negative attributes of impairment and suffering challenges

disability scholarship and the disability justice movement to embrace “complex embodiment,”
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such as the late disability theory and aesthetics scholar Tobin Tobin Siebers called for about a

decade ago (Siebers 2008: 25). Complex embodiment, as Siebers laid it out, accounts for social

and medical factors in the experience of disability. It “raises awareness of the effects of disabling

environments on people’s lived experience of the body, but it emphasizes as well that some

factors affecting disability such as chronic pain, secondary health effects, and aging, derive from

the body” (Siebers 2008: 25). Complex embodiment offers a better model for valuing disability

as human variation rather than defect (Siebers 2008: 25). Further, it moves disability studies

toward an intersectional view of oppression. Without dismissing concepts of the social model or

a sense of disability pride, an ambivalently charged – and even utilitarian – engagement with the

medical field and with chronic experiences of pain and impairment allows the field of disability

studies and the disability rights movement to be more inclusive. Chronic pain and illness

encourages disability studies to articulate the negativity and suffering attendant to disability

experience; and it complicates the politics of disability pride. As feminist disability scholar

Susan Wendell puts it, the making visible of pain and suffering within disability experience need

not fracture the political agenda of the field and its activists. Rather, it invites us to express a

valorization of different ways of being human—fully human. Collectively reckoning with the

diminished capacity and energy that accompany chronic pain and illness challenges us to come

up with different measures of valuation and inclusion, and ways to make participation in the

movement more accessible (Wendell 2001: 26).viii

Pain; unromantic, unglamorous, unheroic, and not tragic, clamors for a more

compassionate epistemology, a more capacious analytic, and for politicized modes of

representation. As Siebers wrote, “the greatest stake in disability studies at the present moment is

to find ways to represent pain and to resist models of the body that blunt the political
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effectiveness of these representations,” citing the pervasive individualizing and privatizating

renderings of pain in medical and cultural discourse as a hindrance to realizing the potential of

pain to mobilize group identity (Siebers 2008: 61). Far from being singularly contained in the

confines of one body, pain radiates out and moves through caretaking and interdependency

networks; “leaky” (Shildrick 1997, Patsavas 2014). This descriptive representation of pain

reflects the actual caretaking relationality that pain both invites and requires. A canonical text in

pain and body studies, Elaine Scarry’s The Body In Pain (Scarry 1983) has by now been

critiqued for reproducing cultural assumptions about the incommunicability of pain, which

serves only to reinforce a privatizing and depoliticizing view of pain and suffering (Scarry 1983:

3). Patsavas’s discussion, published in a 2014 “Cripistemologies”-themed issue of the Journal of

Literary and Cultural Disability Studies, actively “de-individualizes and de-biologizes the

experience of pain” (Patsavas 2014: 209). Weaving together personal experience and analysis of

cultural representations, Patsavas articulates instead how “discourses of personal responsibility

that are consistently embedded in cultural narratives of pain” contribute greatly to experiences of

suffering, and shape representations of pain as so-called tragedy (Patsavas 2014: 209). The

power to amplify suffering and create tragedy lies in many ways with the doctor or medical

clinic that for instance cuts someone off from care, or withholds prescriptions (Patsavas 2014).ix

Paying tribute to the feminist and crip methodologies of Margrit Shildrick and Alison Kafer,

Patsavas articulates an “interdependence of pain” as something relational as well as material that

moves between institutions and bodies, doctors and patients, and through networks of caretaking

(Patsavas 2014: 215).

In her charting of an epistemology of pain, Patsavas calls attention to her social

positionality as inextricable from her experience of chronic pain, in terms of gender, sexuality,
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race and class. Access to legitimation and treatment is always contingent on privilege and power,

and these are inscribed as cultural geographies that entrench, produce, and perpetuate

populations that are more vulnerable to long-term health conditions, be they occupational,

environmental, or communicable illnesses. The representational challenges of chronic pain and

illness demand intersectional and materialist methodologies. That is to say, they call for an

attunement to the compounding multiple axes of oppression and for attention to economic and

geographic structurings.

Because of the ways in which chronic pain and illness make a cartography of social

oppression visible, attention to chronic pain and illness, and to the correctives that they demand

of the disability rights movement by necessity ushers the disability rights movement and the field

of disability studies into a nuanced recognition of the different, compounded experiences of

disability to which non-white disabled bodyminds are subjected (Price 2015, Schalk 2018). If we

follow the “undoing” power of chronic pain and illness upon the discourse of disability studies,

we are inevitably led to conceptualize a more expansive politics of inclusion and access, and to

attend to the diversity of experiences that compose a lived disability polity.x

Critical Disability Studies and Crip-of-Color Critique

At the time of this writing, the field of disability studies has recently gained a critical

mass of scholars forging connections between critical race theory and disability studies, such that

the Spring 2016 and 2017 issues of the journal of the Cultural Studies Association, Lateral,

hosted a forum on emergent critical analytics in the humanities, which included a cluster on

critical disability studies. In this cluster, feminist disability studies scholars Julie Avril Minich,

Jina B. Kim, and Sami Schalk describe a paradigm shift in disability studies as one that moves

away from disability as an object of analysis and towards a “critical disability studies”
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methodology (Minich 2016, Kim 2017, Schalk 2017). This recent turn in disability studies has

benefited from the methodologies of women of color feminisms, which attend to intersectional,

compounding social and economic agents of oppression. Accordingly, in her response, Jina B.

Kim describes critical disability studies as “crip-of-color critique” (Kim 2017).xi What the

methodological and intersectional turn does for disability studies is it widens the scope of what

scholars take into account in a discussion of disability. As Schalk put it, these would include “the

social norms that define particular attributes as impairments, as well as the social conditions that

concentrate stigmatized attributes in particular populations” (emphasis added, Schalk 2017). That

is to say, together with the networked epistemology of impairment that Patsavas gestures toward,

disability studies as a field is now developing a specific attunement to social conditions such as

racism, sexism, economic inequality, and environmental toxicity.xii

Unvictimizable: Demographic Vulnerability and Blame

Scholars and social scientists have increasingly been attending to the impact of social,

political, and economic disadvantage as demographic states of vulnerability to illness.

Demographic incidences of chronic pain and illness have also allowed us to better understand the

“ways in which illness tracks social inequality and vulnerability” (Manderson and Smith-Morris

2010: 3). Chronic and relentess experiences of racist bias in the medical profession, the psychic

and physical toll of daily delegitimation, lack of access to equal medical care—all of these work

in concert in rendering a certain population more vulnerable.xiii Through the lens of AIDS, fault-

lines of “states of privilege and bodies of abuse” can be easily discerned along demographic

lines: the greater incidence of HIV infection as well as the greater incidences of AIDS mortality

in black communities transnationally shows black bodies to be “bodies of abuse” of chronic and

relentless state violence and willful neglect. The advent of PrEP and increasingly effective
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medical control of HIV, on the other hand, shows nonblack bodies living with HIV and AIDS as

a chronic, rather than fatal, illness. That is to say, living with chronic illness due to socio-

economic access is a relative “state of privilege” with regard to HIV.

In State Intimacies: Antiblack Racism and the AIDS Epidemic—an invaluable

contribution to disability studies by way of AIDS scholarship, medical humanities, sexuality

studies, and black studies—Adam Geary interrogates the factors contributing to the black

community’s higher risks and incidences of HIV infection, AIDS illness, and AIDS-related

mortality.xiv Examining discourses of intimacy in relation to risk, Geary reformulates the

pervasive assumption of “risky lifestyle,” formulating instead the phrases “state-manufactured

risk” and “state intimacies” to signify the actual, provable critical factors contributing to the

Black community’s heightened vulnerability to AIDS. With “state intimacies,” Geary articulates

the health risks and risk factors in the case of HIV and AIDS in the black community in the U.S.

and transnationally as a state-structured and engendered demographic vulnerability. “State

intimacies” draws attention to the intimate ways in which the state compromises the health and

safety of certain groups, manufacturing conditions of risk that are in fact far more calculable and

measurable than, for instance, an imagined problem of endemic behavioral nature, or “risky

lifestyle,” which rhetorically and insiduously shifts blame onto already-victimized populations.

Such behavioral privatization of communicability—not unlike the imagined incommunicability

of pain that Patsavas discusses—deflects attention from material, structural, and geographical

factors that contribute to demographic vulnerability, disavowing any social responsibility on the

part of the state.xv

Anna Mollow’s essay in the 2017 African American Review’s issue on Blackness and

Disability, “Unvictimizable: Toward a Fat Black Disability Studies,” introduces the term
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“unvictimizable” to convey the endemic social disavowal of responsibility in relation to those

subject to the compounding identities of race and disability or poverty (Mollow 2017). Mollow

connects the concept of “unvictimizable” populations to a “‘new racism,’ which blames the

social disadvantages that black people experience not on biological impairments [as in older

forms of racism] but on alleged moral failings such as ‘laziness,’ and lack of ‘personal

responsibility’” (Mollow 2017: 105-106). The violence of such disavowal makes it possible, for

example, to hold Eric Garner responsible for his own murder by an officer having put him in a

chokehold and keeping there in spite of Garner’s repeatedly saying “I can’t breathe” (Mollow

2017: 105). In her essay, Mollow points out the ways in which not only ableism but white male

privilege are belied by an exclusive adherence to the social model in disability studies. I

reproduce a long passage in which she details these effects, below:

From a feminist and antiracist perspective, the social model’s depoliticization of

questions about health and illness present problems. For one thing, chronic illness, pain,
and psychiatric disabilities—conditions that disproportionately affect women—do
centrally involve suffering. Thus, by disallowing political discussion of suffering, the
social model erases many disabled women’s lived experiences while valorizing
masculinist stoicism […] In addition, uncritical use of the social model shores up
constructions of black bodies as unvictimizable. Since African Americans are routinely
depicted as incapable of genuine suffering, the social-model-informed disability studies
axiom that disability should not be understood as “suffering, tragedy, or loss” buttresses
the trope of presumed black invulnerability by placing pressure on disabled people of
color to downplay any suffering that their impairments occasion. Furthermore, for many
people of color, impairments result directly from social injustice. […] In a social context
shaped by endemic racialized state violence, disabilities can be experienced as unwanted
and even tragic. Pretending otherwise risks reinforcing constructions of black bodies as
unvictimizable by diminishing the importance of the violence inflicted on them. (Mollow
2017: 113)

The notion that someone is unvictimizable is indeed a deadly form of deligitimation. This “new

racism” that Mollow cites is a hyperbolic degree of the moralizing aspect of the privatization of
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pain that Patsavas and others have described, and which has harmfully depoliticized and

privatized experiences of chronic pain and illness across populations.

Mollow goes on to align endemic environmental racism with the construction of black

bodies as unvictimizable. The disproportionate toxicity exposure that communities of color

experience—from landfills that literally grow around their communities to unremediated or

unregulated lead in the paint or in the water—reminds us of Elizabeth Freeman’s observation

that marginalized communities become moralized and pathologized as “the inevitable waste

product of modernity” (Mollow 2017: 115-116, Freeman 2016: 337). Not only are they

conceived of as waste, but they literally live intermingled among the waste products of

modernity. Environmental racism is just as much antiblack violence as is police brutality, and

has the capacity to be just as deadly.xvi

Bodies of Abuse:
Representing Toxic Ecologies and Expendable Bodies

With increased modernization and the concomitant accumulation of wealth, that is to say

“states of privilege,” many more bodyminds come to experience themselves as “bodies of

abuse,” subject to conditions of chronic pain and illness that are a consequence of, first,

industrial conditions of production, and second, the consequences of deligitimation and

discourses of “unvictimizable” bodies, and of the global instantiation of “environmental racism”

that can be seen in the developing world, on a larger scale. The compromising bodily impacts of

modern and post-modern industrialization, as exercised, deployed, and perpetuated through

structures of power and control, delineate a national and transnational cultural geography of

impairment, debilitation, and chronic pain and illness along the lines of race, class, gender. These
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are human lives hemmed in by borders, streets, railroad tracks, bodies of water, prison walls;

bearing and not bearing the socio-cultural mark of diagnosis, deemed excessive and a financial

burden, and monetized or cut off from access to social resources. Given the intermittently visible

and cyclical nature of chronic pain and illness, writers and artists have employed aesthetics that

both articulate and appeal to visceral sensation and experience, as a way of expressing and

conveying the deeply cultural—and material—experience of chronic pain and illness in the

modern age.

Toxic Ecologies

In her 1970 novel, The Bluest Eye, Toni Morrison’s closing description of Pecola, a

young black girl whose story shows the psychic impact of antiblack violence, shows the zoning

of black communities together with waste products, aligning Pecola’s suffering embodiment—

viscerally and aesthetically—with “junk”:

Picking and plucking her way between the tire rims and the sunflowers, between the
Coke bottles and milkweed, among all the waste and beauty of the world—which is what
she herself was. All of our waste which we dumped on her and which she absorbed. And
all of our beauty which was hers first and which she gave to us. All of us—all who knew
her—felt so wholesome after we cleaned ourselves on her. (Morrison 2007: 205)

In this description, Morrison not only places Pecola in proximity to waste products such as coke

bottles and tire rims: she analogizes Pecola to a plot of land that is dumped upon, and littered

with the waste of a culture whose pleasures of privilege (the novel is set in the 1940s) is

emblematized by cars and soft drinks. This final scene of desolation conveys Pecola as part and

parcel of a landscape of waste, toxicity, beauty, and injured hope. Not only this, but Pecola’s

function as a dumping-ground seems vital to her community’s very sense of wholesomeness:

“All of us—all who knew her—felt so wholesome after we cleaned ourselves on her” (Morrison

2007: 205). Morrison’s description of Pecola and of the community’s affective response of relief
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points to the use-value or even profit yielding function of such “bodies of abuse” for whom

Pecola’s psychic dishevelment is paradigmatic. The community’s need for a “dumping ground”

and a scapegoat conveys Morrison’s attunement to both the capitalist economic necessities that

perpetuate racism, and the environmental implications of racism, in a daily, lived, material way.

Morrison’s rhetorical description of Pecola that presents her as a body of land,

accumulating post-industrial waste finds an apt, if rather more dramatic and surreal, visual

representation in Kenyan-American mixed media artist Wangechi Mutu’s 2013 short film The

End of eating Everything.

Figure 1: Still from The End of eating Everything by Wangechi Mutu (Mutu 2013). Image courtesy of the artist and
Wangechi Mutu Studio.

Image description: This image shows a full “body” view of a large mass with a tiny head on its left side, three
plumes of smoke coming from the top, and one coming from the rear. The body’s shape curves on the bottom
appearing to be hanging down with a heavy belly. The surface of the body is populated with multicolored mottled
paint and dark skinned disembodied arms, and spinning wheels. The body floats in a grey-brown sky, and a flock of
birds can be seen on the left side of the still, appearing to fly towards the face of the figure.
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Commissioned by the Nasher Gallery of Art at Duke University, Mutu’s short film is

meant to be viewed as a part of a gallery installation. In a somewhat darkened corner of the

gallery, viewers encounter this eight-minute silent film with a barely audible soundtrack of

broken glass and cawing birds, playing on a repetitive loop, telling the brief story of a haunted

and haunting figure making her way across a post-apocalyptic skyscape. This film is at once a

commentary on environmental pollution, capitalist overconsumption, and antiblack violence. The

central figure of the film (see Figure 1) presents in its protagonist and central visual figure a

viscerally toxic embodiment that dramatically extends what we are given in Morrison’s

description of Pecola. Mutu’s figure’s body swollen to massive proportions, and populated with

slowly waving arms and slowly spinning and creaking wheels, she is also evocative of the

transnational degradation and impact of postindustrial waste, and of the indiscriminate abuse and

disposal of racialized, gendered, and pathologized bodies.

The figure’s surface, shape, and size variously manifest an animate archive of the effects

of and accumulated waste that is the evidence of the continuing after-lives of racialized, colonial

violence, and global and post-industrial capital. Her heterogeneously constituted flesh is

suggestive of an island or a landscape contaminated by industrial waste and chemical burns and

oil spills. This body and scene on screen that viewers are subjected to is relentlessly played on

repeat, in a darkened corner of an art gallery. In a compelling expression of the chronic,

interrelated embodied effects of inequality, Mutu creates a viscerally toxic encounter for viewers.
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Expendable Bodies
Dollars
Real
Brazil is bankrupted
I am not to be blamed
Without a futurexvii

In his ethnographic study Vita: Life in a Zone of Social Abandonment, published in 2005,

João Biehl inquires into the social, political, and medical factors leading to total abandonment in

the life and death of his ethnographic subject Catarina at an encampment that goes by the name

of “Vita” (Biehl 2013). Biehl’s narrative begins with research into “zones of social

abandonment,” which are places that resemble hospitals but which do not participate in any

official system of care. In such zones, bodies and people have been effectively cut off from an

already struggling neoliberalized medical care system in Brazil.xviii Through the person of one

resident of such a place named Catarina—and through her poetry, to which she refers to as her

“dictionary”—Biehl begins to trace a creative and detective-like single-informant ethnography of

how it is that one ends up in a place such as this—how this exorbitant social zone emerges and is

sustained.

As Biehl discovers, Catarina’s sickness and suffering are significantly—and ultimately

fatally—compounded with and by intimately violent economic and (mis)diagnostic forces. In a

deeply impoverished sub-economy of destitute urban workers struggling to survive in

conjunction with an impoverished medical system struggling to retain legitimacy, the violence

perpetrated against Catarina results in exile from her family and from society at large by betrayal

and opportunistic misdiagnosis. While her physical symptoms are in fact indicative of a chronic

and degenerative physical condition, Machado-Joseph Disease (MJD), Catarina is diagnosed and

treated as a psychotic. Once she begins to show symptoms, her husband begins to abuse and
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cheat on her, and the family seems to collude all together, gaslighting Catarina into a diagnosis

of mental illness and unfitness to mother which led to a coerced surrendering of her new-born

daughter for adoption by a wealthy couple that employed a relative of Catarina’s, and led to her

exile to Vita. This all comes about because the physical debilitation that she exhibits represents

an economic deficit and burden for her family and community.

Thus, Catarina’s actual symptoms are physical and wholly separate from mental illness,

and they are themselves the clue to the unravelling of her life and story. Her mental illness

diagnosis and years of abuse and abandonment (alongside the existing stress and early onset

triggers for MJD) created a hostile social environment and predisposed her to blame for her own

condition. The poverty, deprivation (emotional, sensory, sensual, nutritional), and

overmedication worked in concert with her abandonment create a visual and sensory scaffolding

around her body and her existing disability in order to bolster the prejudicial approaches of those

who would dispose of her in the first place. That is to say her social and medical context

fabricated an unvictimizable status for Catarina, via a diagnosis of mental illness, and subsequent

abandonment. This is the outcome of a setting where a physically debilitated and chronically ill

Catarina cannot be defined or accounted for as anything other than an excessive burden due to

financial strain. The flailing infrastructure of a national medical system that sought to show itself

as “more human and humane” leading to lack of actual medical oversight and diagnosis, and, a

rather rampant free rein situation of socially constructed and fabulated psychiatric illness that

then determines Catarina’s fate. Thinly-veiled disposal of sick family members through a

machine of medical abandonment creates a site of unimaginable abjection and neglect.xix Readers

come to understand that Catarina’s social status and position as a blue collar, poor woman and
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mother creates layers of vulnerability that contribute to her arrival at the terminus of such social

abandonment.

Catarina is well aware of her status as a “body of abuse.” At Biehl’s encouragement she

keeps notebooks of poetry, which she called her Dictionary. Biehl used the experiences, facts

and events described in her dictionary to piece together her life and actual illness status. The

excerpt that I use to lead this section neatly articulates her awareness as a “body of abuse” of

Brazil’s aspirational “state of privilege” in the way in which she has had to suffer from her real

and fabulated illnesses because of the nation’s indebtedness, in a perverse calculus of

disposability and fungiblity. Catarina was diagnosed and treated and disposed of as a “psychotic”

because her physical disability presented too much of a potential economic burden.xx The

concession, after years of treating her as a psychotic, that she is in fact perfectly lucid, is

tragically uneventful in the plot of her life story, as she has already been relegated to the zone of

abandonment, and any change of the new status quo would be a logistical and affective cost

deemed too great by the administrators at Vita and to her family. In her poem, above, her cry for

justice “Brazil is bankrupted/I am not to be blamed/Without a future” makes a very clear

connection of her fatal abandonment as a phenomenon that is beyond her personal life or the

private domestic sphere, but rather, induced by geopolitics and economic policy (Biehl 2013:

336).
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Conclusion: Figures of Visceral Engagement

Figure 2: Photograph of rows of small hand-sculpted clay figurines in a storage shed (Crow, 2015). Photo by
Claudio/Roaring Girl Productions. Image courtesy of the artist.

Image description: A gray-scale photograph of five stacked rows of small hand-sculped clay figurines. The figurines
have two small holes on top to represent eyes, and the figures are very simple, with no arms or legs, just a long body
and a head.

Figures, a 2015 mass-sculptural durational performance by British feminist disability

scholar, artist, and activist Liz Crow, sought to make visceral the suffering of those who are, in

Crow’s words, “at the sharp end of austerity” (Crow 2018). In a photograph from the

performance, rows of small, oblong earthen figures look hauntingly and pleadingly out at the

viewer (See Figure 2). In a storage shed, on shelves stacked one above the other, the figures have

round, hollowed-out eyes, their heads are shaped all slightly differently, and their bodies bear

hand-prints from Crow’s hands. As the viewer’s eye moves from figure to figure, one gets the
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impression of a moving crowd, that appears, on the one hand—insofar as it is of hardened

earth—already dead and memorialized; on the other hand—insofar as each figure resembles a

small living being looking right at you—tugs at one’s emotions in its semblance to a cute, bird-

like, fragile, innocent life. Figures, as is Crow’s intention, speaks directly to and bears material

witness to the suffering and mortality of those who are impacted by austerity measures in her

country, which had been cutting social services and welfare on which disabled and impoverished

people rely for daily life.

A cold, calculated interpretation of the human lives and experiences of people with disabilities in

terms of cost and burden, such as that to which Catarina was so clearly subjected, is something

that Crow carefully and quietly worked to both represent and dislodge in her 2015 durational

sculptural performance. As Robert McRuer has detailed in his discussion of British austerity

measures in Crip Times: Disability, Globalization, and Resistance, disabilities that were not

immediately apparent, or that did not for instance impede one’s ability to stand up (which, of

course, would describe so many sufferers of chronic pain and illness) often resulted in loss of

benefits that people relied on, with devastating individual and community-wide effects (McRuer

2018). All of this, due to the government’s efforts to improve financial appearances.xxi

Figures gives material bodies to and begins to convey the lived experiences that

something like a statistic or a large number—“figure”—quite simply, destroys. Making a visceral

impact is also the work of a very visceral performance, requiring endurance on the part of the

artist. After having excavated and rendered the mud, and prepared it for sculpting, in April of

2015, over a period of twelve consecutive days and nights Crow sculpted six hundred and fifty

small figures out of mud to represent the six hundred and fifty seats in British parliament, while

seated on the foreshore of the Thames river in London. A wheelchair user, Crow had her
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attendants carry her for each sculpting session down to the foreshore. The sculpting period was

the most socially interactive, as curious passers-by from all walks of life would stop and chat. In

a later stage of the performance where the figures were fired, Crowe read the stories out loud, as

a memorial gesture, during the process of baking the river mud into hardened clay. Then they

took the figures to be ground up, and scattered the dust from the sculpted, fired, and ground up

earthen figures in the ocean. Throughout work on the project, which coincided with the

campaign period leading up to elections in British parliament, six hundred and fifty stories of

individuals “at the sharp end of austerity” were tweeted out.

The temporality of this project, requiring many hours to complete, and connected to the

manufactured endemic suffering that was policy-created, speaks to the temporality of chronic

pain and illness as long-term, endemic, and worsened by social and political deligitimation.

Crow characterizes this work as covertly political, contending that in our activism we sometimes

need to shift to a practice that is beyond immediate response, geared towards the long term. She

spoke, in her keynote at the George Washington University’s biennial “Composing Disability”

conference in March of 2018, of “going under cover to do more” (Crow 2018). It is perhaps not

so much an overtly politicized but it is very much an aspirationally politicizing work of art—

seeking to engage people from all walks of life, who may have been affected to far lesser and far

greater degrees from one another. Above all, this work is about “a dry statistic made visceral,”

and breaking down a sense of otherness (Crow 2018). In her discussion, Crow described her

performance’s approach to politics as “a sideways approach,” and one that does not leave

questions fully answered (Crow 2018). Rather, I would venture that she wants it to haunt, as her

figures very much do, once you’ve spent some time looking at them. Durational, quietly
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contemplative, viscerally evocative art articulates and capacitates a different kind of protest, one

that has the potential to be continuous and endemic.

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WORKS CITED/REFERENCES

Aho, Tanja. “Neoliberalism, Racial Capitalism, and Liberal Democracy: Challenging An

Emergent Critical Analytic.” Lateral 6.1 (2017). http://csalateral.org/issue/6-1/forum-alt-
humanities-institutionality-neoliberalism-racial-capitalism-aho/. Accessed 5 May 2018.

Amar, Paul. The Security Archipelago. Durham: Duke University Press, 2013.

Berlant, Lauren. Cruel Optimism. Durham: Duke University Press, 2011.

Biehl, João. Vita: Live in a Zone of Social Abandonment. 2005. University of California Press,
2013.

Carter, Angela, Theodora Danyelvich, and Alyson Patsavas. Co-written call for papers on
“Cripistemologies of Continuous Crisis” for the 2018 American Studies Association
Meeting.

Clare, Eli. Exile and Pride: Disability, Queerness, and Liberation. 1999. Reprint, Durham: Duke
University Press, 2015.

Cowley, Sophie. “‘Csoming Out’ As A Spoonie.” HuffPost Blog. 8 April, 2015.

https://www.huffingtonpost.com/sophie-cowley/coming-out-as-a-
spoonie_b_7013638.html. Accessed 5 July 2018.

Crow, Liz. “Including All of Our Lives: Renewing the Social Model of Disability.” First
published in Encounters with Strangers: Feminism and Disability. Ed. Jenny Morris.
Women’s Press: 1996. Accessed online: http://www.roaring-girl.com/wp-
content/uploads/2013/07/Including-All-of-Our-Lives.pdf. Accessed 5 May 2018.

---. Keynote talk given at Composing Disability: Crip Politics and the Crisis of Culture” at the
George Washington University on March 22nd, 2018.

---. Figures. Mass-sculptural durational performance. 2015. wearefigures.co.uk. Accessed 5 May

2018.

Erevelles, Nirmala. Disability and Difference in Global Contexts: Enabling a Transformative

Body Politic. New York: Palgrave Macmillan, 2011.

Freeman, Elizabeth. “Hopeless Cases: Queer Chronicities and Gertrude Stein’s ‘Melanctha.’”
Journal of Homosexuality 63.3 (2015): 329-348.

Frye, Lezlie. “From U.S. Disability Rights Historiography to Crip Pasts: On Truth’s Excess.”
Conference presentation at Composing Disability: Crip Politics and the Crisis of Culture
at George Washington University, March 23, 2018.
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Geary, Adam. State Intimacies: Antiblack Racism and the AIDS Epidemic. New York: Palgrave
Macmillan, 2014.

Johnson, Merri Lisa. Girl in Need of a Tourniquet: Memoir of a Borderline Personality.

Berkeley: Seal Press, 2010.

Johnson, Merri Lisa and Robert McRuer. “Cripistemologies: Introduction.” Merri Lisa Johnson
and Robert McRuer, special issue co-Editors. Journal of Literary & Cultural Disability
Studies 8:2 (2014).

Keefe, Patrick Radden. “The Family That Built an Empire of Pain.” The New Yorker, October
30, 2017.

Kim, Jim Yon and Joyce V. Millen, Alec Irwin, and John Gershman, Eds. Dying for Growth:
Global Inequality and the Health of the Poor. Monroe: Common Courage Press, 2000.

Kim, Jina B. “Toward a Crip-Of-Color Critique: Thinking With Minich’s ‘Enabling Whom?’”
Lateral 6.1 (2017). http://csalateral.org/issue/6-1/forum-alt-humanities-critical-disability-
studies-crip-of-color-critique-kim/. Accessed 5 May 2018.

King, Noel and Andrew Kolodny, Interview. “Why is the Opioid Epidemic Overwhelmingly
White?” All Things Considered, National Public Radio.
https://www.npr.org/2017/11/04/562137082/why-is-the-opioid-epidemic-
overwhelmingly-white. Accessed 5 May 2018.

Labuski, Christine. It Hurts Down There: The Bodily Imaginaries of Female Genital Pain.
Albany: SUNY Press, 2015.

Manderson, Lenore and Carolyn Smith-Morris. Chronic Conditions, Fluid States: Chronicity
and the Anthropology of Illness. New Brunswick: Rutgers University Press, 2010.

McRuer, Robert. Crip Times: Disability, Globalization, and Resistance. New York: New York
University Press, 2018.

Minich, Julie Avril. “Enabling Whom? Critical Disability Studies Now.” Lateral 5.1 (2016).
http://csalateral.org/issue/5-1/forum-alt-humanities-critical-disability-studies-now-
minich/. Accessed 5 May 2018.

Mitchell, David and Sharon Snyder. Cultural Locations of Disability. University of Chicago
Press, 2005.

Mollow, Anna. “Criphystemologies: What Disability Theory Needs to Know About Hysteria.”
Journal of Literary & Cultural Disability Studies 8:2 (2014):185-201.
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---. “Unvictimizable: Toward a Fat Black Disability Studies.” Blackness & Disability, Ed. Therí
Pickens, African American Review 50:2 (2017): 105-121.

Morrison, Toni. The Bluest Eye. 1970. Reprint, New York: Vintage Books, 2007.

Mutu, Wangechi. “The End of eating Everything,” 2013. Courtesy of the Artist and Gladstone
Gallery. Commissioned by the Nasher Museum of Art at Duke University, Durham,
North Carolina. © 2013 Wangechi Mutu and Wangechi Mutu Studio.

Nelson, Alondra. Body and Soul. Minneapolis: University of Minnesota Press, 2011.

Parker, Richard. Beneath the Equator. Abingdon: Routledge, 1998.

Patsavas, Aly. “Toward a Cripistemology of Pain” Journal of Literary & Cultural Disability
Studies 8:2 (2014).

Pickens, Therí, Editor. Special issue on Blackness & Disability, African American Review 50:2
(2017).

Price, Margaret. “The Bodymind Problem and the Possibilities of Pain.” New Conversations in
Feminist Disability Studies, Ed. Kim Q. Hall, Hypatia: A Journal of Feminist Philosophy
30:1 (2015).

Puar, Jasbir. The Right to Maim. Durham: Duke University Press, 2015.

Rosner, David and Gerald Markowitz. Deadly Dust: Silicosis and the On-Going Struggle to
Protect Workers’ Health. 1991. Reprint, Ann Arbor: University of Michigan Press, 2006.

Schalk, Sami. Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s
Speculative Fiction. Durham: Duke University Press, 2018.

---. “Critical Disability Studies as Methodology.” Lateral 6.1 (2017).

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methodology-schalk/. Accessed 5 July 2018.

Shildrick, Margrit. Leaky Bodies and Boundaries: Feminism, Postmodernism and (Bio)ethics.
Abingdon: Routledge, 1997.

Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2008.

Sontag, Susan. Illness as Metaphor and AIDS and Its Metaphors. London: Picador, 2001.

Villarosa, Linda. “America’s Hidden HIV Epidemic.” The New York Times Magazine, June 6
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Washington, Harriet A. Medical Apartheid. New York: Penguin, 2006.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia 16.4
(2001): 17-33.
i
I would like to express my gratitude to all those whose work (cited here), advice, and feedback have helped me to
fashion this entry. In particular, I would like to thank Alyson Patsvas for taking the time to speak with me at length
in the early stages. I am grateful also for timely insights offered by Robert McRuer, David T. Mitchell, Clare
Mullaney, Zahari Richter, Sharon L. Snyder, Craig Willse, and Samuel Yates. I am grateful also to Liz Crow and
Wangechi Mutu for agreeing to share their work for inclusion in this piece.
ii
In disability and chronic pain and illness communities, having a certain amount of “spoons” per day is a
frequently-used shorthand used to describe limited energy and ability (Cowley 2015).
iii
Christine Labuski’s recent book, It Hurts Down There: The Bodily Imaginaries of Female Genital Pain goes into
depth on the impact of not being able to talk about the body part that is in pain, for example (Labuski 2015).
iv
Here, a proliferation of recent scholarship in disability studies can be easily turned to (Schalk 2018, Puar 2018,
Patsavas 2014, McRuer 2018, Mitchell and Snyder 2015, and many more). “Capacities of incapacity” is a phrase
that David Mitchell and Sharon Snyder use in their 2015 The Biopolitics of Disability: Neoliberalism,
Ablenationalism, and Peripheral Embodiment (Mitchell and Snyder 2015).
v
In their 1991 book, Deadly Dust: Silicosis and the On-Going Struggle to Protect Workers’ Health, David Rosner
and Gerald Markovitz brought silicosis, a deadly occupational disease with a devastating and continuing toll, back
into public discourse (2006). The book was republished in 2006 as a testament to its great importance to the cultural
geography and epidemiology of chronic pain and illness.
vi
Perhaps the most contentious association with chronic pain in the contemporary moment is the “epidemic” of
opioid addiction in the U.S. This chapter’s discussion of chronic pain and illness in the modern age does not dwell
on opioid addiction, as I am more interested in laying out some important transformations that attending to the
experience of chronic pain and illness has and is effecting greater intersectionality in the politics and field of
disability studies. Notably, because of racist bias regarding vulnerability to pain, the black population has been less
impacted by opioid addiction on the whole because of some of the problems of deligitimation and lack of access to
adequate care. The stereotype of pathologized and addiction-prone black people should have been proved
abundantly wrong in the overwhelming whiteness of sufferers and victims of the opioid epidemic. As Dr. Andrew
Kolodny put it in a November 4, 2017 interview on the “All Things Considered” program on National Public Radio
(NPR),
Our new opioid addiction epidemic is sparing African-American and Latino communities, and it's striking
when you look at the data. Whether you're looking at overdose deaths or emergency room visits for opioid
use problems or treatment admissions for opiate addiction, it's very clear that this epidemic is
overwhelmingly white. And it begs the question, why? I can share with you a theory, and it is a theory
that's based on evidence.

Something that we do know is that doctors prescribe narcotics more cautiously to their non-white patients.
It would seem that if the patient is black, the doctor is more concerned about the patient becoming addicted,
or maybe they're more concerned about the patient selling their pills, or maybe they are less concerned
about pain in that population. But the black patient is less likely to be prescribed narcotics, and therefore
less likely to wind up becoming addicted to the medication. So what I believe is happening is that racial
stereotyping is having a protective effect on non-white populations (King and Kolodny 2017).
vii
The work of disability scholars and activists Eli Clare, Liz Crow, Nirmala Erevelles,, Anna Mollow, Tobin
Siebers, Susan Wendell, and all of those mentioned in this chapter have played important roles in conceptualizing
this shift (Clare 2015, Crow 1996, Erevelles 2011, Mollow 2014, Siebers 2008, Wendell 2001).
viii
David T. Mitchell and Sharon L. Snyder’s recent book, The Biopolitics of Disability: Neoliberalism,
Ablenationalism, and Peripheral Embodiment develops an understanding of peripheral embodiments and capacities
of incapacity which sheds even more light on the particularities of what modes of knowledge and being are available
to us from human variation (Mitchell and Snyder 2015: 180)
ix
Of course, one of the biggest reasons for access to medications being blocked in the context of chronic pain is the
panic around opioid addiction. Opioid addiction, as Patrick Radden Keefe has written in his October 30, 2017 The
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New Yorker piece on the Sackler family, has itself been created and fed by corruption and bribery within the
pharmaceutical companies and sustained by direct-to-consumer marketing (Keefe 2017). Given this, we can also lay
the blame for consequent regulation and anxiety that cause a higher incidence of people in chronic pain being
blocked from receiving medication at the feet of profit driven pharmaceutical marketing. This tight regulation and
constant surveillance of opioid prescriptions adds the specter of moralization a ubiquitous presence in the lives of
those who require such medications, subjecting them to greater bureaucracy and expense, more frequent doctor
visits required for refills, the need for hard copy original scripts and higher costs of prescriptions. Notably, also, due
to the higher credibility that comes with white male privilege and financial means, opioid addiction—and access to
the treatment of such addictions—is a chronic illness directly derivative from “states of privilege.” Hence the
moralizing atmosphere of states of privilege and bodies of abuse that permeates and radiates out from the oblong
white Vicodin pill.
x
This is a reference to the title of Christina Crosby’s A Body, Undone: Living on After Great Pain (2016).
xi
Crip-of-color critique, drawing on a lineage of queer-of-color critique attends to “systemic de-valuation … of non-
normative bodies and minds,” which is also frequently correlated with impairment and disablement (Kim 2017).
Crip-of-color materialism is yet another articulation of what critical disability studies as a methodology does. A
Crip-of-color materialism particularizes crip-of-color critique to engages what the Black Marxist tradition refer to as
Racial Capitalism. Feminist disability and mad studies scholar Tanja Aho makes a more explicit connection to “crip-
of-color-materialism” in the same issue of Lateral, drawing on and extending feminist disability studies scholar
Nirmala Erevelles’s “materialist disability studies” (Aho 2017, Erevelles 2011). In Disability and Difference in
Global Contexts, Nirmala Erevelles turns to a consideration of the history of transatlantic slavery in her analysis of
the coupling of disability and fungibility that the slave trade effected, imbricating attributes of disability and debility
with commodification and the material and discursive dispossession that capacitated the institution of slavery in the
U.S. (Erevelles 2011). In Erevelles’s analysis, it becomes clear that disability and commodification were co-
constitutive in the transformative dehumanization that was the transformation of violent enslavement upon which
the capitalist economy of “modernity” has been predicated. Erevelles’s approach has some affinity to Jasbir Puar’s
2018 book, The Right To Maim: Debility, Capacity, Disability. Puar uses the term “debility” to describe what crip-
of-color materialism or materialist disability studies describes as a culturally and politically produced demographic
vulnerability, to illness, impairment, and injury (“maiming,” to use Puar’s word) (Puar 2018). That is, “debility” in
Puar’s book descriptively names what I have been outlining in my discussion thus far of the intersectional evolution
of the field of disability studies that attentiveness to the quandary of impairment and compounded identities has been
generating, especially over the last decade.
xii
Schalk argues that the methodological attunement that Minich, Kim, and herself—among others—are advocating
allows “critical disability studies [to] better engage in conversations about the ways both ability and disability
operate in representations, language, medicine, the law, history, and other cultural arenas,” and to attend to
historically variable definitions of disability (Schalk 2017). With regard to social norms, Schalk formulates
“(dis)ability” as a designation of “social norms which categorize, rank, and value bodyminds” (Schalk 2017, 2018).
For Schalk, here, disability is “a historically and culturally variable category within this larger system” (Schalk
2017).
xiii
Jasbir Puar’s new book The Right To Maim: Debility, Capacity, Disability discusses at length the biopolitics of
certain populations being available for injury with regard to Israel and Palestine (Puar 2018).
xiv
In line with the “crip-of-color materialism” that Aho and Erevelles gesture toward, Geary’s project works to
reclaim a “black materialist” tradition of health analysis, reaching back to W. E. B. Du Bois, which “defines the
social causes and origins of health and disease, relating them to the power relations” (Aho 2017, Erevelles 2011,
Geary 2014: 7). A “materialist epidemiology” such as the one Geary’s book presents, takes “welcoming biosocial
conditions” into account, rather than limiting himself to biomedicalizing discourse.
xv
Naming “state intimacy” or “the violent intimacy of the racist state” as the primary risk factor paints a more
accurate picture (Geary 2014: 2). He writes,
I argue that the racial blackness of the US AIDS epidemic has been produced not by the behaviors of
African Americans but by the conditions of structured, racist domination. Racism, not race, ethnicity, or
culture. In dominant social and scientific discourses, HIV infection has been understood to index perverse
intimacies of sex and drug use, what are politely named “risk behaviors.” AIDS has been considered a
consequence of these intimacies. For black Americans, however, I argue that the primary structuring factor
that has determined risk of HIV infection has been what I call state intimacy, or the violent intimacy of the
racist state. (Geary 2014: 2)
THEODORA DANYLEVICH 32
CHRONIC PAIN AND ILLNESS IN THE MODERN AGE:
STATES OF PRIVILEGE AND BODIES OF ABUSE

Geary cites “structured impoverishment” and segregation, contributing to “increased malnutrition, concurrent
infection, and overall immiseration that lend toward increased susceptibility to HIV infection,” noting that “racially
unequal health and healthcare must … be recognized as significantly structuring risk and vulnerability to infection”
(Geary 2014: 5).
xvi
Mollow notes that Freddie Gray was a victim of environmental racism before dying from police brutality –
having been raised in an environment with unremediated lead, he was diagnosed with learning disabilities, and had
high levels of lead in his blood (Mollow 2017: 114). Further, she writes:

Historically and contemporarily, black neighborhoods have been used as dumping grounds for toxins that
white people have the political and economic clout to keep out of their communities. People of color are far
more likely than whites to have little choice but to live near landfills, hazardous waste facilities, coal-fired
plants, and chemical factories; they also face disproportionate levels of water contamination and air
pollution (Mollow 2017: 115).

Mollow also notes that lead gets into household dust and is ingested by breathing, and “it is virtually impossible for
people who live in lead-painted homes to avoid breathing or ingesting this contaminant,” contrary to the popular
behavioral assumption one must eat lead paint to be affected (Mollow 2017: 115).
xvii
This is an excerpt from Book XI of The Dictionary, which is an expansive collection of the poems that Catarina
has written in her tenure at Vita. In this excerpt, Catarina makes a quite lucid assessment of her situation and of the
origin of Vita in the bankruptcy of the nation (Biehl 2013: 336).
xviii
Notably, as a “developing” nation in whose politics the U.S. has had a heavy—and disavowed—hand, Brazil
presents an exceptional example of the violences of rapid industrialization followed by rapid neoliberalization, and
the economic inequalities and the immiseration of the poor are stark and vast (Amar 2013, Biehl 2013, Parker 1998).
xix
Notably Biehl’s published account is accompanied by photographs, as though to attest to the incredible conditions
here.
xx
With a great deal of time and energy, João recuperates a diagnosis for Catarina’s actual illness, quite different
from psychosis; enacting a reverse hysteria on her case—or rather, revealing her social and familial context to be
themselves performing a social psychosis—though too late for her life to be recuperated.
xxi
Although Figures is the official project title, Crow’s piece has the phrase “We Are Figures” associated with it,
which is a pointed expression of her work as embodying what these abstract figures in statistics and finance might
represent, and resisting such abstraction.